I want to begin this particular post by making it clear that I am not a physician, nurse, or nutritionist. I am simply an autoimmune warrior who has learned to be become an advocate for my own health. I have spent more than 20 years coping with CREST Syndrome (limited Scleroderma), Hashimoto’s Thyroiditis, and Sjogren’s Syndrome. After making my healing journey the top priority this past year, I feel compelled to share my story in the hopes that it may help others suffering from autoimmune conditions find answers. There is no agenda other than to spread awareness and to support fellow #spoonies and their loved ones.
“Epstein-Barr, you mean mono?”
This was my response, verbatim, when I was first presented with EBV as a potential root cause of Hashimoto’s Thyroiditis.
My mind drifted back to 10th grade. During the fall of that year I spent many afternoons doing high kicks as punishment for excessive talking at dance team practice. I was on a team of over 60 teenage girls so attempting to control our chatter was as futile as trying to get a kindergarten class to sit through a historical documentary without fidgeting. We practiced for 3 hours each day and were understandably exhausted by the time the weekend rolled around. For that reason, I didn’t think much of fellow team members napping to and from Friday night football games on our yellow school bus with non-existent suspension. Although I loved to dress up, awkwardly “flirt” with boys, and do my make up (which included not so subtle eye glitter and the occasional swipe of blue mascara back then), I often felt overwhelmed by estrogen when I spent too much time with a massive group of females. I loved my teammates and am close with several of them to this day, but back then I needed a healthy dose of grunge, gangster rap, and Metallica to establish some balance. So while the viral induced slumber took place around me, I was preoccupied with balancing my pre-non skip Discman on the palm of my hand, ever hopeful that I could get through at least one song on the Chronic 2001 without interruption. I was unsuccessful about 90% of the time.
Miraculously, I managed to avoid the mono epidemic at my high school despite sharing plenty of water bottles at practice and making out with an upperclassman at a party who was like soooo cute but had plenty of practice before me. Mono was clearly not the cause of my health issues. I would obviously know if I had been infected.
WRONG! I was humbled once again along path to healing.
A family friend who also copes with autoimmunity recommended that I listen to the Medical Medium podcast. Yes, I said the word medium. I rolled my eyes when she made the recommendation, but after getting my thyroid panel results earlier this year I was at a loss for where to turn. My thyroid peroxidase (TPO) antibodies were over 3000 IU/mL. I will not go into the science since you can read about it here, but given that Dr. Isabella Wentz considers the standard range to be below 35 IU/mL and the ideal range to be below 2 IU/mL… my level was close to 100x that which is considered healthy.
My reaction to the test results was, “WTF???” Eloquent, I know.
I was already off gluten and dairy, I was practicing yoga, I was meditating, I was taking all the recommended supplements, and I had switched from Synthroid to Nature-Throid. I thought I was doing everything right so I felt incredibly frustrated.
Two roads diverged in a yellow wood, and after taking both the one more and the one less traveled by (traditional western approach and alternative), I ended up back at square one. Riddle me that, Robert Frost.
I did the mature thing when I got the news. I spent the day stuffing my face with dairy free ice cream, watching my favorite Hallmark Christmas movies that took up 80% of the DVR space, and going for a drive while blasting a Yacht Rock playlist on Spotify (I occasionally behave as if I’m 33 going on 60, and I am perfectly ok with it). After I got the solo pity party out of my system, I decided to stop feeling sorry for myself and continue my healing journey undaunted. This was just another lesson that would make me stronger.
The journey for answers that lay far outside the box began…
First, I listened to the Medical Medium podcast that my friend insisted I check out. I have been working on my connection to something bigger than myself for some time. I am currently reading and completing the daily workbook assignments for A Course in Miracles so it goes without saying that spirituality is now a very important part of my life. Still, I was skeptical about the notion of Anthony William getting information about chronic illness from “spirit.” Thankfully I was able to keep my skepticism at bay long enough to download to the podcast episode that focused on Epstein-Barr. I put on my headphones, went for a walk, and did my best to keep an open mind.
I quickly realized as I listened that it didn’t matter how this person received his information. What he was saying made sense to me, and that allowed me to let my guard down. He mentioned that tonsillitis is often the result of an Epstein-Barr infection along with the virus’ bacterial BFFs like strep. My tonsils were so inflamed at age 4 that they were touching, and my pediatrician told my parents that the inflammation in my adenoids made my tonsils seem tiny. An adenotonsillectomy was swiftly performed, but no mention was made of a possible viral issue.
No wonder I never had mono in high school; I was exposed to Epstein-Barr at a much younger age.
The podcast went on to talk about viral reactivation, and it occurred to me that I knew little to nothing about how viruses work. They can reactivate and often take the opportunity to do so when our immune systems are functioning less than optimally. Autoimmune symptoms began to appear when I hit puberty and was dealing with stress in my family over finances. I never connected those physical and emotional stressors with a dip in my natural immune response, but it made complete sense.
I scheduled an appointment with a functional physician who confirmed in advance that he would run a viral panel. When I got the results a week later, the abnormal summary page lit up like a Christmas tree. Not only did I have a reactivated Epstein Barr (HHV4) infection, but I was also dealing with HHV6, cytomegalovirus (HHV5), and parvovirus B19. To save you some time, and hopefully keep you from going down the Google rabbit hole that I did when I got these results, below are some (but not all) issues associated with adult chronic reactivation of these viruses:
- Chronic Fatigue
- Multiple Sclerosis
- Lyme Disease
- Hashimoto’s Thyroiditis
- Multiple types of lymphoma and carcinoma
I didn't realize how much bitterness I harbored towards my own body for attacking itself until I saw the viral test results. The fact that my immune system was trying to kill a virus, and that the attack on healthy tissue was just collateral damage, was a revolutionary concept for me. I had a newfound respect for my body which exponentially increased my motivation to heal. If my body had my back all this time, I was more than happy to support its efforts in any way I could.
My younger self would have been on the hunt for a pill to nip these infections in the bud, but I had learned so much since taking the functional medicine approach. I spoke with my doctor, a nutritionist specializing in autoimmunity, and a variety of alternative practitioners they each recommended. I opened my mind and my body to a variety of alternative methods for healing.
Reactived viruses along with a few pesky microbes have been wreaking havoc on my body for decades. The solution is not to simply attack the viruses themselves but to restore my body’s proper immune function. I am about to begin the Medical Medium 28 day protocol which involves addressing my stress level, toxic exposures, issues in the liver & gut, and diet (at a deeper level than I have before). I am also taking a variety of natural herbs and supplements to combat the viruses. This is the most challenging, but hopefully most rewarding, leg of my healing journey. I can’t wait to share the details and results.
If you have been suffering from chronic illness of any kind, especially an autoimmune disease, and you’re willing to keep an open mind, I highly recommend giving the Medical Medium books and/or podcast episodes a try. It certainly can’t hurt.
“No medicine can compensate for un-healthy living.”
― Renu Chaudhary